tonic clonic

Our Life With Epilepsy {Epilepsy Blog Relay 2017} {Epilepsy Awareness}

June 20, 2017 by Dana

This post is part of the Epilepsy Blog Relay™ which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!

This is our first time participating in the Epilepsy Blog Relay™ but if you’ve read our blog before then you know that Epilepsy is life for us. I turned 38 a few days ago and I have had Epilepsy since I was 3 months old. I am a wife and a mother to four children, three of which have had some type of Epilepsy during their lifetime. I have been an Epilepsy Mom for 14 years now.

My oldest, thankfully, does not have Epilepsy, though he does have struggles of his own. He’s allergic to penicyllin and mold. He struggles educationally. He has sensory issues.

My second born, my daughter, was the first of my children to have Epilepsy. She was 3 months old when she had her first seizure, 2 weeks following her vaccine series. She continued to have tonic clonic, absence and complex partial seizures until she was 5. At five she stopped having seizures and began having migraines instead. At 14, she’s been seizure free for 9 years though she still has migraines occasionally.

My third child, my second daughter, began having seizures at 4 months, 2 weeks after having her vaccine series as well. She also has tonic clonic, absence and complex partial episodes. She is now 9 and has not outgrown her seizures. As the years pass, our hope becomes less that she will outgrow them. She has yearly EEG’s which show nothing and she’s on Lamictal currently after having allergies to everything we tried in the past. She is mildly delayed due to an allergic reaction to Trileptal when she was an infant.

My fourth child, my youngest son, has a different condition. He official diagnoses is Involuntary Breath Holding Spells that trigger Epileptic Seizure. Involuntary Breath Holding is a common childhood disorder which becomes dangerous when seizures that follow last longer than the average 30 seconds to 2 minutes. For my son, the seizures last anywhere from 10-20 minutes. 20 minutes is the longest we’ve allowed them to go without stopping them with emergency diastat medication.

Epilepsy brings many challenges in life. I went from being the person that seizes, to being the person who watches their child seize. Our family is rare in that we have 5 known directly descending generations with Epilepsy beginning with my great-grandfather down to my children. My children are the first generation since my grandfather’s generation to have multiple siblings with Epilepsy.

Being a person who has seizures is hard. Being a Mother of children who have seizures is harder. I do not know what our days will bring as Epilepsy is not a predictable disorder. Even though my oldest is not currently having seizures, it does not mean she never will again. It’s a disorder we are always watching for, looking for even the smallest of events that may be a heads up for a larger event.

I don’t wish our life on anyone and yet I know our life could be worse. I’ve been lucky in that we’ve never had more than one of my children (or myself) seize on the same day. I call us blessed because I know this could be worse. I see it in the Neurologist office and in my Epilepsy groups online every day.

I began blogging in 2009 and I wasn’t sure what this blog would be about. It didn’t take long for me to find my purpose here though. Sharing our life and our story about Epilepsy, our day to day challenges, things we go through in an effort to helps others who, like us, struggle to understand and live with this disorder.

When I began blogging there were not many Epilepsy Mom bloggers. I can understand why. This isn’t an easy thing to share. When our families are seizing, then we’d just rather it go away and we’d rather pretend we’re normal and it doesn’t exist. But the truth is, it does exist. It doesn’t go away. It’s always there, even when it’s not active.

There’s always the fear. The fear that the day will end with a seizure or the morning will begin with one. The fear that a seizure will happen in their sleep and you’ll wake to find them not breathing the next morning. The fear that you’ll have a day full of too much excitement that leads to a week of seizures that are unstoppable. The fear of Status Epilepticus and SUDEP. The fear never goes away.

And you never forget. You never forget how your child or your loved one looks laying lifeless and out of control. You never forget the feeling of helplessness you as a parent feels. You never forget the confusion a seizure creates. And you definitely never forget the thankfulness you feel when your child or your loved on wakes up and comes around from the seizure’s effects.

Epilepsy life is hard. It’s not a life any of us would choose but it’s one that we are forced to live every day. We deal with the not knowing, finding hope and strength in whatever we can to get through it. The Epilepsy community is a tight nit one because we each understand the challenges and triumphs of living with Epilepsy.

Epilepsy is our life and you can read more about it and how we deal with our day to day through the many other Epilepsy posts we have shared on our blog. I promise there will be many more posts to come as we continue to share and work towards helping others understand what living with Epilepsy is like. I hope our blog encourages you to share your own Epilepsy story with others. Advocacy and Education for Epilepsy is one of the best things we can do for ourselves and our families.

May each of you be blessed,
Dana Lambert-HodgeNEXT UP: Be sure to check out the next post tomorrow with Danielle Daley on Facebook at https://www.facebook.com/Italianbabydollxox for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com.

Don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET.

Double Trouble with the Epilepsy Monster {Epilepsy Awareness}

July 30, 2013 by Dana

I come here and try to write but it’s hard to. I can’t even describe what I’m feeling right now. Exhaustion, fear, dread top the list. It’s official. The diagnoses of Epilepsy is now tagged to three of my four beautiful children.

Sunday night and early mornings are now time periods that I dread. Jax’s seizure seem to happen on Sunday afternoons and Laycie’s upon waking in the mornings. I find it so strange how even in a case of siblings, Epilepsy is so absolutely different.

I had just returned from the grocery store on Sunday afternoon and was putting the groceries away. I had Emma in the living room playing with her brother. I called her to come help put something away. I can’t remember what at all now. I remember telling her “Come help. Jax is laying there playing and everyone is back and forth to keep an eye on him.” I’m thankful I called her away and yet I question if I hadn’t would he still have seized or could it somehow have changed the dynamics of the episode? My heart tells me it only would have traumatized my sweet girl.

Emma tells me it was like a dream. She was looking at Jax and talking to him all the while heading to the pantry room. She rounded the corner when she heard me cooing, “oh sweet baby, Jackson”.

I remember looking over at him doing his normal commando half crawl, roll, play with toys that he always does when he’s happy and content. He was whining just a little. Not a cry but more a complaint. I figured he wanted someone to pick him up or wanted to know where big sister just ran off to.

I remember looking at him and seeing his eyes grow cold and empty. I remember my heart stopping.

His grandmother was closest to him and I remember saying, “Momma, look at Jax… is he alright?” We both began calling to him but he was slipping away into that unknown world that we cannot reach. His little body tightened and bawled. His breathing became labored. He became so tight that he rolled from his side to his stomach on his own with the convulsion.

It was only a few seconds. Then Grandma lifted him and in all his stiffness, he was just as limp and the life was slowly slipping out of him. His breathing became more labored. There was no cry. It almost looked like he was choking and I remember commenting to her about that but I knew he wasn’t. I know the difference by now.

I ran to call 911. I started to dial on my cell and stopped. I remember thinking what if it fails. I grabbed the house phone and dialed. I hung up. I dialed again and hung up. He wasn’t breathing. By the time the ambulance got here he could be well gone.

I remember yelling for Jax’s Dad who had just fallen to sleep napping. I remember the kids calling him. He came immediately. He looked at Jax. He ran for the car along with Grandma. I ran for my purse, knowing that my ID was needed as well as his medical information.

I remember looking at my babies and saying “I’m sorry we have to go with your brother. Y’all know what to do.”

My sweet Emma. My precious girl. Who has been through this so many times herself. My baby. She was my rock at that moment. She was my strength so much more than she will ever know. She grew up in that instant. At 10 1/2 years old, she looked at me and said “Just go, Mommy, we’ll be ok and we’ll take care of Laycie. Just go and help Jackson.” And I knew without a doubt she would do everything she could to care for her sister while I cared for the little piece of her heart that she calls her baby brother.

I grabbed my purse, told the kids to lock up behind me and ran out the door. Josh was on the phone with his Grandmother letting her know the kids were at the house before we left our drive. Thank God she lives only down that drive and was there to keep an eye on them.

He also called 911 to ask where the nearest ambulance was at. There was not one available on the way but they requested her stop and pull over and they’d come to us. He refused and told him we’d be there before they could even get to us and he wasn’t stopping until his son was in the ER.

Grandma held him on the ride. All this time he was seizing. His sweet face was grey blue. He was not responsive. At one point I did hear him cry. It was only a brief cry but then he went into another Gran Mal seizure. Grandma had to do mild CPR to keep him breathing.

As we arrived at the ER, we ran inside. No one was at the desk. A security guard opened the ER door. We didn’t wait for him, we ran past. They were already waiting for him and immediately went to work taking blood and checking vitals. It wasn’t long before he was coming out of this episode.

As he returned to normal, he had 3 absence episodes. Finally, after a few hours, he took a nap and when he woke up he was normal again. We were in the ER for 5 hours and I was just thankful to finally have solid proof that he wasn’t having Apnea spells as the neuro first thought. There was finally solid proof that Jackson has Epilepsy, like so many in his family before him.

Last night I couldn’t sleep. I was fearful of being awakened to find him seizing again. I am still terrified he will repeat his last episode. My sixth sense told me more was to come and it wasn’t off at all.

Laycie was sleeping in the bed with me as she has done almost nightly since her Gran Mal in June. At 7:45 I awoke with a start for no apparent reason. Laycie was still asleep. Within minutes I knew why I’d woken up.

I watched her sleeping. I watched her open her eyes. Normally, she’d smile at me and tell me she was awake but not this morning. Instead, she had that blank stare. The same as the one Jackson had on the floor playing the night before. She wasn’t looking at me but her eyes were open. Her breathing labored. Her mouth opened in an “O” and her tongue began to dart in and out. Then she began to chew her tongue with her mouth opened. I talked to her the whole time. I remember saying, “Laycie, can you hear me? Laycie, Laycie, can you hear Mommy”.

She couldn’t respond and by this point her mouth had closed and she was chewing her tongue still. She was turning her head to me like she knew where I was and I was desperately trying to keep her head sideways so that her tongue did not obstruct her breathing. Instinct told me if she lost her breath, this partial seizure may become a full blown Gran Mal.

The whole episode only lasted a minute, maybe two. She doesn’t remember it at all. I called Grandma to come over in case she had another while I got her medicine and gave it to her. She didn’t but she did have an absence episode while she waited that lasted only a few seconds too.

Once her meds were in her, she acted ok. Around naptime she had some other possible mild activity where her eyes were “odd” looking but I am not sure if it was seizure related or just her being a 5 year old. It’s hard to tell the difference sometimes.

After Laycie’s episode this morning, we headed into the Peds office. They evaluated both kids and found no cause for the episodes so they called into MUSC to schedule us and discuss treatment options. I spent over two hours waiting for these things to be done only to come home and wait for them to call me. Finally, at 3:30 pm I called them because I had not heard back. Within minutes of talking with scheduling to make the appointments, I had a call from Laycie’s nuero’s nurse and then from her neuro herself as I was calling the nurse back.

Her neuro was the best as always and she is having us seen in office on Wednesday. Hopefully, we will have some kind of answers then. And hopefully we will start a med for Jackson.

When I had Emma, I never dreamed I’d have more kids with Epilepsy. When she outgrew hers, I was thankful though I always worry it will rear it’s ugly head again.

When I had Laycie, I wasn’t expecting Epilepsy to be a part of her life. I quickly learned I was wrong. Now I wonder if she will ever outgrow it.

When Jackson was born, I was terrified he’d have this too. When we made it past the 3-4 months that his sisters began seizing, I thought “Ok we made it past it”. When he had his first episode three weeks ago, I thought “Ok here we go”.

Every day I wake and think “I have three kids with Epilepsy. How will I handle having two kids with active seizures?” Every day I’d like to live a normal life and ignore it’s existence or crawl into a hole until it goes away. I know that won’t do my children any good though.

We are a medical exception and an extremely rare case. It is not normal to have so many generations with Epilepsy or multiple siblings who have it. It’s a genetic abnomality that we’ve yet to discover. It’s my goal to find that gene, to help my children’s children, to learn as much as I can about our Epilepsy and our family and how it works for us so that our future generations can live as comfortably as possible with this disorder.

It’s my goal with this blog, to journal our experiences and share with others who are like us or who are new to this whole Epilepsy world. I’ve lived with Epilepsy for 34 years now. I’ve been an Epilepsy Momma for 10 years now. It doesn’t get easier and it doesn’t go away. It is there every single day, rearing it’s ugly freaking head and when you least expect it, the Epilepsy Monster strikes out.

This is our life, the rawness, the emotion, the truth of it all. And I will spread awareness of this awful disorder until the day I return to being dust of the earth.

The Darkness That Lurks {Epilepsy Awareness}

June 18, 2013 by Dana

How do you do it?

How do you tell your baby, one of the prettiest, sweetest girls you know, the child whose older sister proclaimed as our angel the day she was born, that she won’t die? How do you even deal when those words come from the mouth of your beautiful 5 year old daughter?

My Momma heart breaks for her. My Momma heart wants to scoop her up and hold her tight and keep her safe forever.

I want to SCREAM. I want to SCREAM to God, “WHY?! Why my daughter? Why my precious baby? Why does she have to suffer with this? Why does anyone suffer?”

I can’t reassure her that she will wake up from the next seizure. I can’t reassure her that there won’t be another one. I can only tell her about Heaven and all the great things that await her there. Even when I don’t want to because I pray deeply and hard that she will not know for a long, long time.

“Momma, who turned out the lights?”, she asked me. “Was it you?” “No, baby.” “Was it Daddy? Why would Daddy cut the lights out on me?” “Daddy didn’t, angel.” “Oh, Grandma did it then!”

All this past week she has been terrified of the dark. It didn’t take me long to figure out what she meant. Her whole little safe world went dark last Tuesday morning. She couldn’t see for almost an hour. Her eyes dilated so much that she wasn’t able to see anything but a black abyss.

And it hits me: just how terrified she was. That this seizure affected her sight so badly. That the next one could honestly leave her blinded for good. That I’m thankful this seizure didn’t leave her blinded for life.

It hits me that she could have died last Tuesday. That she stopped breathing on me. That there was nothing I could do and no amount of CPR could stop her brain from overloading and her body from seizing. It had completely taken control.

All I could do was watch and pray. All I can do now is wait and pray. I do daily and she has prayed too, wholeheartedly. We all have.

Tomorrow morning, or rather in a few short hours this morning, at 7:30 am, it will be one week from her worst Grand Mal since she was 4 1/2 months old. One week has passed. Multiple conversations to make her forget and feel more at ease have happened.

Every day we have the same talk. “Momma, it was dark.” “I”m so sorry, Laycie.” “But you didn’t turn out the lights on me?” “No, baby.” “You will keep on a lamp for me.” “Always, if it makes you feel better.”

And I do. She sleeps in the bed with us for now, until we know this monster called Epilepsy is controlled again. I leave the light on for her and for me. It helps me see if she’s breathing. It helps me see if she’s a little too still. And it puts her little mind to ease.

I don’t know what the future holds. I don’t know how to calm her fears other than talk with her, listen to her, be with her, every waking and sleeping minute. And pray, for her and with her every time she needs to do that and even when she isn’t even aware I am.

I’m thankful that God has blessed us with more time. I’m well aware of the Mothers that weren’t given that chance. My heart aches for them and for all the Momma’s who must watch their babies suffer so much.

For now she sleeps, though it’s still very much restless and we wait patiently to see if this monster is lurking or controlled for now. Only time will tell.